IV IG: Intravenous immunoglobulin infusions

[Trish]

For what it’s worth : This is from the big online TreatME survey 2023.
- 65% ME/LC says they benefit from SCIG / IVIG
- 7% adverse events / strong side effects

I think these figures
- are positively skewed (possibly some placebo effect ?)
- better response Long Covid patients

View attachment 31374

I would not trust an Internet survey like this as a basis for decisions about my health. We have no way of knowing whether the respondents are real people, have really tried the treatment, have ME/CFS, have a financial interest, or anything about dosages or long term follow up, whatever other treatments they tried, natural fluctuations, and so on.

 

[Felis Catus]

For what it’s worth : This is from the big online TreatME survey 2023.
- 65% ME/LC says they benefit from SCIG / IVIG
- 7% adverse events / strong side effects

I think these figures
- are positively skewed (possibly some placebo effect ?)
- better response Long Covid patients

View attachment 31374

This is very different from what I've seen in the groups I'm in.

I've seen people talking about side effects and feeling wrecked afterwards, some quitting because the crashes were too much for them.

I'm not sure if anyone reported improvement.

 

[ryanc97]

It works slightly for me, gets rid of my POTS completely. Did 3 months of it in Oct last year. Only recently my POTS started to come back (eg fast HR when I get out of bed)

Also since I took it I haven’t fell sick yet, I used to get flu every month, even after ME.

 

[Arfmeister]

This is very different from what I've seen in the groups I'm in.

Which type of groups are you in ?
Seasoned ME patients ?

Would be interesting how you summarize their experience.

Personally, I know some patients that benefit / benefited and also some patients that have crashed from IVIG
From SCIG I haven’t heard any crash story as of yet.
……………

Currently wrt data - as far as I can recollect - there were a few (inconclusive) small ME patient IVIG trials quite some time ago, one recent on low dosage SCIG, and there is one trial for Long Covid coming up in the US.
And than there is anecdotal experiences and lowest quality of online survey data available.

 

[Arfmeister]

What evidence is there for that?

IVIG has a high peak dosage (often monthly) flooding Fc receptors
SCIG is low dosage and continuous dosage. (1-2x / week)

Don’t you think that it could make a big difference if you administer a high dosage e.g. 1 or 2 grams/kg at once?
(Vs. 0,1 grams/kg SCIG)

In particular when we have no evidence that it 'works' at all?

I have no evidence wrt ME/LC.
I was referring to difference in pharmacokinetics and possible receptor engagement - in general.

 

[Jonathan Edwards]

IVIG has a high peak dosage (often monthly) flooding Fc receptors
SCIG is low dosage and continuous dosage. (1-2x / week)

Don’t you think that it could make a big difference if you administer a high dosage e.g. 1 or 2 grams/kg at once?
(Vs. 0,1 grams/kg SCIG)

That is only relevant if you are wanting to flood Fc receptors over a very short time span (a few days at most) - in a bleeding crisis from immune thrombocytopenia for instance. We aren't talking about short term crises of that sort so presumably the Fc flooding is irrelevant.

IVIG is often used for long term replacement and in that situation is much the same as sub cut.

 

[Arfmeister]

IVIG is often used for long term replacement and in that situation is much the same as sub cut.

But important to note that with SCIG there is less risk of side effects and adverse events.

 

[Felis Catus]

Which type of groups are you in ?
Seasoned ME patients ?

Would be interesting how you summarize their experience.

No, sorry, it's mainly LC groups and a couple of ME groups but the IVIG conversations took place in the LC groups. Since they're private groups, there is only so much I can tell.

 

[Jonathan Edwards]

But important to note that with SCIG there is less risk of side effects and adverse events.

Probably not. It depends on how you handle delivery. For most protein agents like Ig and Mabs IV is safer if you monitor the infusion because you can stop it. With sub cut, the adverse reaction may occur after you have already given the full dose and there is nothing you can do to reverse that.

If you give the same dose the side effect profile is probably much the same.

 

[Arfmeister]

If you give the same dose the side effect profile is probably much the same

What I’m implying is that prescribed SCIG dosages are a lot lower and absorbed at a lower rate.
SCIG vial dosage - I think - normally comes at maximum 16 grams ?
But normally lower. Physically, one is limited to how much grams one can administer / absorb in fat tissue on one day.

 

[Utsikt]

What I’m implying is that prescribed SCIG dosages are a lot lower and absorbed at a lower rate.
SCIG vial dosage - I think - normally comes at maximum 16 grams ?
But normally lower. Physically, one is limited to how much grams one can administer / absorb in fat tissue on one day.

The absorption rate would only be relevant if it’s the main issue when someone has an adverse reaction to the drug. Is that the case, or would someone react badly regardless of the rate?

 

[Kitty]

Is that the case, or would someone react badly regardless of the rate?

I guess they might, if they had an allergy or other kind of hypersensitivity reaction?

(Ignoring that there's no trial evidence or theoretical basis to support offering the treatment in the first place, so there should be no issues with negative reactions.)

 

[Jonathan Edwards]

Is that the case, or would someone react badly regardless of the rate?

The key factor for monoclonals, which have similar issues with reactions involving complement activation or mast cell responses, is that with IV you can stop input the second you get a reaction. In general reactions occur in the first 30 minutes, after which time you can gradually increase input rate without worries. If you give a dose sub cut the patient may have a catastrophic reaction when they get home three hours later as enough drug has been absorbed into the circulation. This was something we predicted when sub cut was mooted for rituximab and for another antibody (I think an anti-CD22) it proved to be exactly that. Sub cut doses were followed by serious reactions later in the day.

For Ig the reactions are usually milder but they can get worse over repeated doses. For monoclonals the first dose is usually the problem unless there is a long gap and the person has become sensitised by a previous course.

I have no idea why Ig in whatever form should help ME/CFS. I suspect it doesn't.

 

[Felis Catus]

I have no idea why Ig in whatever form should help ME/CFS. I suspect it doesn't.

I am not convinced it does but some doctors (incl. in the UK) claim that they help the majority of their LC/ME/CFS patients. Patients who are wealthy enough to afford it, try to make a decision based on the info on side effects they gather from online groups. Then you have doctors who say that people experience side effects if the infusion rate is too high... So it becomes hard for a desperate patient to make an informed decision. From the outside, it seems like some doctors are willing to say anything in order to make profit.

 

[Jonathan Edwards]

From the outside, it seems like some doctors are willing to say anything in order to make profit.

There was never any doubt about that. Doctors did that, and only that, for centuries before anyone hit on treatments that actually worked.

It isn't that hard for a patient to make an informed decision though - just look up established guidelines like NICE, which are derived from a rigorous analysis of what is known. Even those are not perfect but the evidence for pros and cons of Ig are pretty well reviewed.

 

[Felis Catus]

It isn't that hard for a patient to make an informed decision though - just look up established guidelines like NICE, which are derived from a rigorous analysis of what is known. Even those are not perfect but the evidence for pros and cons of Ig are pretty well reviewed.

When I did that for an off-label treatment that was offered to me, I was told that I wouldn't experience the side effects because I wouldn't be taking the drug for its licenced use, unlike people who were taking it for its licenced use and experienced the documented side effects. The dose was supposed to be the same as a typical dose for its licenced use. I'll never know because I refused.

 

[Utsikt]

When I did that for an off-label treatment that was offered to me, I was told that I wouldn't experience the side effects because I wouldn't be taking the drug for its licenced use, unlike people who were taking it for its licenced use and experienced the documented side effects. The dose was supposed to be the same as a typical dose for its licenced use. I'll never know because I refused.

Oof, I’ve been told I won’t experience harm from the drugs because the doses are so low. Of course they can’t explain how the dose is high enough to have a beneficial effect, but not high enough to have a harmful effect.